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Monday, February 28, 2022

Hospissed

 For those of you who have taken enough of a beating, let me give you absolute permission to just skip reading this blog for awhile (if you promise to come back!) because for now, this space is just going to be about venting to keep me from going mad (I was already crazy, but in a lovable way).

In much the same way a robin heralds the return of Spring, we can tell it's Monday here in Hospice Acres because we saw a white staff member. Like the swallows to Capistrano, management returns on Mondays. The boss dropped in to see how we were doing, we mentioned still being in a total state of ignorance, the half-hour waits when the call button is pushed, the lack of supplies and, because I ran out of tact a long time ago, I asked why the whole frigging staff is Jamaican.

This was laughed off and I was assured they aren't ALL Jamaican, although he conceded that it's "quite an international group." I explained that between their accents and my hearing aids, there was no real communication. "I have bad hearing too," said the manager. "Yes, it's hard."

He then explained that we're lucky that there are employees at all in this job environment, when so many have found it profitable just to stay home and wait for the money to roll in.

We also saw the perky white social worker today who popped in just long enough to ask if we'd be "free" (uh, yeah) at 2 o'clock tomorrow to discuss our "care plan" and get basic orientation. This will be on day 5 of our stay. Anyone besides me see the inherent flaw in that timing?

But theoretically, several representatives of our hospice team (a different agency) will drop in today to offer us support, counseling, and guidance. I'd say there's maybe a 50% chance anyone shows, and no more than a 10% chance that we'll be any more supported, counseled, or guided when they leave.

The space we're in is essentially a dorm room with two remarkably cheap, noisy, and uncomfortable hospital beds. There are no trappings which would suggest that this is in any way a medical facility. I will occasionally leave the room and slalom my way through the dementia patients in wheelchairs (and God bless the poor souls) to get a tepid cup of coffee. Or visit the trunk of my car in search of a missing mouthful of Clan MacDesperation.

Kathy still can't speak because of her mouth sores and a universe which apparently really, really hates us. She's not sleeping well, and it doesn't help that she/we know the supposed end game but don't know what to look for now, what to expect in the future, or know how the blow(s) will be cushioned. But yeah, orientation on day 5 will be fine, thanks.

All of this being said, I doubt that other such facilities are better and I believe that many would be even worse. I don't think the home hospice we considered is likely an option at this point.

We're together, which is what's crucially important, and hopefully Daughter J can visit again today or tomorrow (after yesterday's emotional visit, she didn't sleep much last night). The bond between the three of us is about the only tangible thing we have left, so it's a good thing it's such a strong one.

Sorry for the doom and gloom, but please know that your comments, support, and prayers continue to lift us up. And to end on what will need to be considered a positive note, the Fort Worth Symphony Orchestra will be dedicating this weekend's concert to Kathy, in part because I co-wrote it, and in larger part that I could never have survived as a creative writer if Kathy hadn't been the breadwinner (in shitty jobs) until I got my professional legs under me.

Updates and trips to the trunk of my car as necessary.

167 comments:

Jess said...

Prayers, and hope.

RTT said...

Prayers for all.

Anonymous said...

Please know that you're not venting into empty space. We care. I'm reading every post and I'm praying for you and Kathy.

Grandma Em said...

Oh, Stilt, vent all you want to us. If it helps you get to the next day or next hour, we're good with shouldering some of your troubles. We wish you strength, all varieties.

Mike aka Proof said...

Stilton, as I was praying for you and your family this AM, two quotes came to mind. The first, from Hemingway: “The world breaks everyone and afterward many are strong at the broken places."
The second from Walter M. Miller's 'Canticle For Leibowitz': "You don't have a soul, Doctor. You are a soul. You have a body, temporarily."
I'm glad the M-W, 9-5 "A Team" showed up, although it doesn't sound as if they did much.
Our prayers continue for you and yours.

Phil said...

I'm even more saddened to hear about the lousy care Kathy is getting.

We chose home hospice for my mom and the women were fantastic. Of course, this 1992, before idiots like Biden paid people to stay home.

I hope you meeting comes through and that there is something that they can give her to ease the pain.

God bless you folks.

Jill of all Trades said...

It sounds so miserable to not be home. I’m so sorry. I hope they can at least live stream the orchestra for you! Cancer sucks. 💔💔💔

Anonymous said...

I understand. Been there - done that. I'm a retired nurse. He was here at home. I was doing most of the work (and what they were doing was stuff I could have done). Frustrating to say the least!!!! Hang in there and give her all the love you can find!!

PA Ray said...

Stilt, with Kathy enabling you, many have benefited from your comments and humor.
Now, we all are sad but appreciative that you have allowed us to peak into your lives, however difficult.
I imagine that there has been significant financial impact on your family. You have never asked, but would you accept a few bucks from friends who would like to help?
If so, maybe someone can set it up?

Julie K said...

Continual prayers for you and your family.

Callindril said...

Stilton, My father-in-law, a great guy...no really!, was in the same boat in the Tampa area of Florida recently, and we had the same kind of "welcome" as you in the place you expect care and attention...I don't think we got our "orientation" until day 4 or 5, and yeah..what a waste of time that was...From what I have seen first hand, and reading your experiences and seeing the many similarities, I am ashamed of the way care like that is handled...and we were supposedly in one of the 'better' ones in the area...God help everyone in that situation...My family and I pray for you, Kathy, and Daughter J...

jhsilcox said...

Kathy and Daughter J are lucky to have you. Don't let yourself forget that; not to pat yourself on the back but for you to recognize that you are both loved by others and needed.

Anonymous said...

I know a woman who works in a hospice in Colorado who says it is warm and comfortable and caring, and my cousin had home hospice care in her last weeks that she and her husband found to be as excellent an experience as something like that can be. The conditions you describe are simply not tolerable, and I hate to think you don't have options.

Vent as much as you need. You have created a huge virtual family out here that is emotionally and spiritually with you through all of this.

Mrywidow said...

Sending real prayers and virtual hugs to you and Kathy and your daughter...

Anonymous said...

If you write it, I read it. Every word. The strength in your family is astounding. I would say superhuman, but then strength like yours is what makes humans able to rise and handle the unimaginable.

G Cooper said...

Stilton, vent all you want. You have a large group of supporters out here. We all have you in our prayers. Stay tough for your family.

Blessings, George

Anonymous said...

So sorry for this…..
I myself have been in the very same position.
Non Hodgkin’s lymphoma was my wife’s cancer.
Yes she suffered the same as your Kathy suffers.
I hope you can come away from this with your soul intact.
There are no easy answers.
Thoughts and prayers………

Paul Donohue said...

We continue to pray for the three of you. Please, by all means, vent as much as you'd like. The good Lord knows that you need some way to relieve the constant pressure that you're under. You remain in my thoughts every single day, multiple times.
I hate to think that I'll be putting someone else in your position in the near future, yet I know that it will happen. I'm praying now that she will have the strength to deal with it - or walk away. I would understand and accept either.
I know that you have the strength to soldier through this, although it's taking a great toll on you both physically and emotionally. Just know that Kathy loves you even more for staying with her.
God bless you all.

Anonymous said...

Rant on, my brother! That's what we're here for.

Randy S. said...

God bless you brother! It's hard now, but the Lord has it all figured out. DON'T LOSE FAITH!

Julie said...

Just in case you don't know about Compassus,I hope that you will check this out. Here in Yuma we have for-profit Hospice & a non-profit Hospice; however, Compassus was the biggest help for a Hospice situation. I don't mean to interfere but my sad heart just can't help itself.

https://campaigns.compassus.com/locations/texas/fort-worth?gclid=EAIaIQobChMI8bbN2-2i9gIVyxitBh01Kg-rEAAYAyAAEgJ5xPD_BwE&source_id=215&utm_campaign=Fort+Worth+%7C+Hospice+%7C+Lower+Funnel+%7C+Non+Brand+%7C+Search&utm_content=fortworth-location&utm_medium=cpc&utm_source=google&tab=location_overview

Don said...

Stilton,

Sadly our hospice experience here in California sadly mirrors yours. You are doing the very best thing possible by your presence, by tirelessly asking questions, and pressing the staff for service/assistance - the squeaky wheel does get attention. I am so grateful for your sharing your and Kathy's ordeal with us - we are learning a great deal that will help us when it is our turn - thank you. You are an example to all of what it means to me a loving human being. You three are the example of the strength of the bonds of family, and the importance of finding humor in these dark hours.

TrickyRicky said...

Stilton, I can only imagine the despair and frustration. Please be assured that your devoted audience is reading every word you post and we are deeply sympathetic, and yes I do know the old saw about the placement of sympathy in the dictionary. But in this instance, the sympathy is genuine and our prayers for your family are continuing.

I was going to suggest home hospice, but it seems you have determined that route is not available in your situation. Remain the squeaky wheel and I hope Kathy can be made more comfortable where you are. Take as many trips to the cave of the Clan as necessary.

I don't know what more I can say....

Bill M. said...

We had home hospice for my FIL, MIL and daughter, and they were a Godsend. I can't imagine the stress you're under. We send our prayers...

Anonymous said...

That just sucks. Prayers for all yall.

Mark McKinney said...

Stilton. My heart goes out to you. I hope and pray the hospice people can help. Some of these are superior organizations. Staying by your wife's side says much about you! Don't read the newspapers.

Al n.. said...

I went through this last September to my 49 year old son who thankfully(?) passed when on of the arteries in his brain thought that the blood should not travel inside of it anymore after 6 rounds of the ten rounds of radiation that was being done in his brain (Guess we nicked that one Jameill). At least it was sudden and ended the excruciating unbearable headaches and the pressure increases day by day.
My heart goes out to you.. If it even eases even one iota of frustration, Write more. You cannot see us, but we are here to hear you.
We can all see the side of the solid rock mountain that the railroad tracks lead straight to. We can hear the train whistle in the distance and hear the roar as the train is accelerating... it may be close or it may be far away only God knows.. we sure as hell don't ..

Murphy(AZ) said...

Stilton, a few points.

First, they hire Jamaicans because the alternative is Haitians.
Second, the Monday thru Friday "management" staff is what we used to call Day Ladies when I was in the service. You'll never see them after supper, on weekends, or on holidays. Never. When I joined the civilian workforce, they were called White Shirts, as they were always required to wear white dress shirts as part of their "uniform." It made them easier to spot by us grunt-level types when they would show up unexpectedly for their inspection visits.
Third, in all of my adult working life, military or civilian, somebody ALWAYS had a bottle of SOMETHING out in their trunk. It was the ones who kept it in their locker or desk that you had to keep an eye on.
Fourth, ALL of us continue to pray for you all, and hope for a miraculous outcome. God bless you all!

Alan said...

Vent all you want to Stilton. We're here for you. Things must have changed at Hospice, or you got a bad one. My mother spent 3 months in Hospice here in South Carolina around 1996 and got fantastic care. So fantastic, in fact, she moved out and into a nursing home for the next two years and got Hospice care there too. But come to think about it, hospitals were much better then too. Now I think they're trying to kill patients.

CenTexTim said...

To vent is to relieve pressure, thereby preventing an explosion. Since there are enough explosions going on already in this world, preventing one in north Texas is a good thing.

Seriously, it's a shame that such a distressing and meaningful time of your family's life should be made even more difficult. Hopefully conditions will improve. We will certainly be praying that they do.

Stay strong, brother.

The Overgrown Hobbit said...

I appreciate knowing what to pray for, Mr. Stilton.I am glad for you that your wife did not enter hospice under lockdown so you can be with her. Prayers for grace and peace and healing.

No doubt someone has already offered this, but a lightweight mini dry erase board and markers can help with communication.

A white noise generator/infant sound-soother can help with the ambiance.

Elbarto said...

Am really sorry to hear about your poor experience with hospice care. That really contrasts with the hospice care that my mom received in the Phoenix area. The staff was also international (almost exclusively Filipino), but the gave my mother great care during her dying days. Hope things turn around for you and that Kathy receives the kind of care she deserves.

Pattymelt said...

I am sorry Kathy,you and daughter re ping through this. You are in my prayers. My father was in hospice before he died. I hope Kathy's caregivers are as comassionate.

KJM said...


All we can give is our prayers for you and Kathy, but know that you have been on our prayer list since we heard.........................

John the Econ said...

Welcome to the future of health care in America. Most of the people who might have been doing this work instead went into debt for Social Justice Warrior degrees and now live in their parent's basements complaining about economic injustice when not at Antifa or BLM rallies. Pays about the same, but with far less physical or emotional toil.

But seriously, I am so sorry that this is where you're at. It certainly shouldn't be. (Considering what we've paid for it) This place sounds so different than the place that I used to volunteer at. But times have changed too.

As always, my prayers are with you all. I wish I had more to offer in this scenario.

Rod said...

Stilt as so many have said, you write it and we read it, every word, be they funny, be they sad. You and Kathy through you give inspiration and comfort to us. Yes to us knowing that the love and life you two share endures through these last days. As surely as God will give Kathy peace and a healthy body He will also give you strength and will always keep a part of Kathy within you.

Glenda T Goode said...

I can understand your lack of enthusiasm for the Hospice facility. I had the (mis)fortune of spending well over a year in a physical rehab facility that was also is a nursing home and hospice care. I did get good physical therapy there but the rest of the care from the nursing staff and aides could be very spotty. What I realized was that there are good people and people who just ought to have another career. You have met a lot of the latter.

Social workers in these facilities are overworked and oriented more towards ensuring funding for medicaid patients than anything else. They do care but they work for the nursing/hospice care owners and do what they are expected to do and that is far more money oriented than they would like to admit. Even so, I hope your SW is helpful.

Does Kathy really need in facility care? There are home based hospice services that can provide support and visiting nurse services and you could take Kathy home where she is most secure and happy. You would be more 'on duty' but it would be a calmer and quieter setting. Just a thought.....

My prayers go with all of your family and especially for all of you to have peace and comfort through the coming days and weeks.

Sortahwitte said...

We're family, Stilt. We're here to do everything we can for you. When you vent we read every word. When you take a swallow at the trunk, we are there. When you kick the car tires, we hurt our toes with you. And we still pray for that miracle. Love, Glen and Sioux.

EJ said...

Your story is sad but, your spirit is a beam of light in and otherwise known outcome. We read and understand the frustration that you are forced to endure. Take heart in the Clan and keep writing it will help you maintain your sanity. You write and we listen. Prayers. e.

Mr. Bits said...

I can't pretend I know what God's grand plan is, but I know on a personal level how shitty many of its facets can be, and how at times we may doubt his divine wisdom and love because like Job, just when you think things can't get any worse...
Anyway Mr. J. we are all praying for you and your dear wife asking for blessings for your greatest and highest good.

Shelly said...

I am a bit curious why you have decided home hospice is not for you. We had it for Mom and it was a godsend. The home hospice nurses were extremely kind and compassionate. Their main goal was to keep her pain free and comfortable. Plus she was in her familiar surroundings where loved ones could come to visit with her. This was in 2008 and I know health care has changed since then. Whatever your choice, I hope you and Kathy can settle into a comfortable routine and you get help when you need it. And I wholeheartedly agree that the time for tact and diplomacy is over. Tell 'em like it is!

Justin_O_Guy said...

If the sores are white spots inside, canker sores,a silver nitrate stick,used only on the white stuff will knock them out.

https://www.walmart.com/ip/NEW-Silver-Nitrate-Sticks-6-Caustic-Applicator-10-Individual-Sticks-Exp-2025/631849532?wmlspartner=wlpa&selectedSellerId=101009190&adid=22222222222388154507&wmlspartner=wmtlabs&wl0=e&wl1=o&wl2=t&wl3=74423327614680&wl4=pla-4578022862196872:aud-812472222&wl5=&wl6=&wl7=&wl10=Walmart&wl11=Online&wl12=631849532_10001028573&wl14=silver%20nitrate%20sticks&veh=sem&msclkid=ba3283d96b9a1f881882e1c461ea4b1b&gclid=ba3283d96b9a1f881882e1c461ea4b1b&gclsrc=3p.ds

Lee The Voice said...

Man, I feel terrible for you. Wish I do more, but all I can do is pray for you, and as a bone deep believer in Christ, that's about as good as it gets.

Julian said...

Vent on, my friend, and you have my contact info if you want to vent b y text or voice any time. Still praying for all of you. And irony of ironies- I spent a number of years in medical supplies, my late wife was a degreed med technologist for over 30 years, and as a result of what she/we went through in hospitals and "rehab centers" for the final years of her life,I have more faith in a local witch doctor or shaman than in most of Big Med and Big Pharma. There are still some good doctors, I know this, but the institutions themselves? Sheee-it. Love you guys. And please don't make a return trip from you trunk carrying a crowbar or lug wrench.

Sharon D. said...

I wish I knew where you were. I would bring you more Glan. I would do what ever anyone could for you and Kathy. VENT here. We all love you and Kathy and that precious daughter. I could be your uber and get what ever you needed. Mr. J. thank you for loving Kathy so much and showing us all how to weather the storms of life.

Chief Rocket Scientist said...

Thank you for all of the camaraderie you have shared with me and your following. You vent as you need dear friend....that could help prevent a BLEVE. You must have somewhere near a Bazillion friends out here who are listening and wanting to be as supportive as possible. Just know that many, many, many care deeply and are sharing your grief. May God bless.
Tom

Anonymous said...

I am praying for you and Kathy both. Stay strong, God be with you.

KenoshaMarge said...

I am so sorry for what is happening to you and Kathy. Life has dealt her enough blows without silencing her now and without adequate care.

The care isn't any better much of any place else from all I can discover. My husband is in a "rehab facility" but receives about as little care as you describe. He had his right leg amputated and has had to hernia surgeries and receives about the same lack of care.

The dementia squad also roam the halls of his "rehab facility" as it is also a nursing home and these poor folks receive damn little care too.

I am just telling you about this so that you know that this kind of treatment of patients now seems to be nation wide. Nursing facilities are understaffed in the best of times and now that Nurses who refuse to be vaccinated are being fired it is worse.

All I can offer for your Kathy, your family, and my husband is prayer. We need to pray for each other because if this is the best country for medical care in the world - the world is in a lot of trouble.

Bless you and God keep you,

Marjorie Swanson
Wisconsin

John said...

My RN wife was a Hospice nurse for a few years, her patients were staying in their homes which was a much better environment for palliative care. Hopefully your loved one can come home for hospice care.

Do the best you can and never look back thinking you could have done something better.

Peace and comfort for both of you.

John

Veince Bob said...

Prayers for the three of you. Thoughts, then more prayers! In His Great Love, Bob

Doc Claussen said...

Praying for all of the Jarlsbergs in this difficult time. May you find the strength you need.

JHOLTSCLAW said...

BRING HER HOME

Terri S said...

Prayers and virtual hugs to Kathy, yourself and daughter J. I can't change anything, but I can care!

Kentucky Packrat said...

Please be careful about taking Kathy home. I understand that quite a few people had a better experience at home than in the hospital, but sometimes staying at home can be a LOT harder. Milady had to have mega-doses of morphine the last 48 hours, and you can't get that at home. We only went in for what we thought was a respite visit to help Milady restart eating, but the care team saw that she was going to go down the higher-pain path and helped us stay the whole time.

TVAG said...

This. Sucks. Big. Time.

But, with the others, I still pray now, and very simply, for God's Miracle.

Otherwise, we're all here to listen to anything you may care to say, now and forever.

Peace, My Brother and Sister, peace.

TVAG

MsPony said...

I don't know in which state you live (state in the Union, not the state of confusion), but where I live/work, morphine is dispensed to home hospice patients.

Please, don't give up on the possibility of home hospice, especially since it sounds like the place where you are currently domiciled is a POS.

I am so sorry to hear that you are getting shafted (further), and pray that resolution comes to the situation, and that you find a place of comfort from which to send off the love of your life.

God hold all of you close, and send an angel with good news.

Stilton Jarlsberg said...

@Dear Readers- Thank you for the virtual shoulder rub. I know you're really listening and really care, and that makes such a difference. I haven't decided if I should put updates on the front page or just keep adding them here. Logical thought is not one of my strong suits right now.

Let me address some questions that have been asked here. Why not home hospice? A lot was happening in the hours after Kathy was given no hope and we said that hospice of some kind would be our choice. A deceptively nice lady came to the hospital to talk to me about all of the many, many layers of care and handholding her agency could provide whether at home or in a facility. However, that "care" would consist of a medical visit or two per week, and I'd have no assistance caring for Kathy other than a 30 minute visit from an aide each day. Oh, I could hire round-the-clock care (and would) but the agency couldn't/wouldn't help with that and I wasn't ready to start comparison shopping while sobbing. Moreover, Kathy cared for her own dying father in her family home and it was a bad experience.

Now that we're here, we've learned a lot. This is a nursing home, rehab facility and we're in the nursing home wing. The doctor comes to the facility once or twice a week. Two nurses, in 12 hour shifts, provide the only actual medically trained help here.

The hospice agency is essentially another layer of bureaucracy to "keep an eye on things" by which they mean "slow everything down by another business day." Actually, they're collecting all the Medicare hospice benefit money while I pay for this facility. Apparently Medicare would have picked it up otherwise. I don't care about the money, but now I'm not sure if I have hemorrhoids or just a bad case of being boned up the ass.

Our alleged caseworker dropped by to say she was sorry we feel lost and abandoned, but that the rule is that they have "five BUSINESS days" to meet with us and present a care plan. And the Friday, Saturday, and Sunday we've been here don't count. It's odd; I thought hospice would be more of an immediate service once you've paid for it, like prostitution. But no.

Kathy is on her first dose of morphine now, to see if it helps her tongue pain and to see if it knocks her out (which we don't want yet) or gives her headaches or vomiting or a desire to take a dump on the sidewalks of San Francisco. Currently she's napping. And if we get to the point where she's mostly napping/drugged and I'm here, it won't be a lot worse than if we were home. Maybe.

Someone mentioned the financial impact of all this and offered to help. I'm touched but can assure you it's not necessary. While our luck has been spectacularly shitty lately, at an earlier time it was pretty darn good to us. I was earning enough (as a writer, which is a miracle in itself) to have some money to invest, and thanks to a subscription to the "Motley Fool" advisory service, it turns out I invested very well indeed. (more below)

Stilton Jarlsberg said...

So we're financially fine. Medicare has picked up pretty much everything until now, and whatever this facility costs I can afford without thinking about it. Trust me, a man who actually drinks Clan MacGregor knows how to stretch every penny.

What else? In fairness, the staff here MAY be Haitians instead of Jamaicans. Actually, I'm sure there are many colorful and interesting nationalities here, their only similarities being a distinct lack of Nordic roots and inability to deal with English phonemes, vowels, and consonants.

And yes, the bottle of Clan MacKillMeNow has found its way into the room because I got tired of getting the hairy eyeball from the possibly meth-addicted woman at the entrance desk who has bright red hair, startled-popping eyes, and layers of tanning spray inside the Covid mask which hangs from one ear.

And no, I'm not looking at or reading the news, though we hear a little bit listening to the Scott Adams podcast which I highly recommend. He's a super smart guy who just doesn't think the way other people think, and he sounds remarkably unstressed and amused when arguing that World War III has already started. Works for me, I guess.

Again, bless you all for being much-needed family right now. Keep praying.

JimC said...

Nothing I can say or do except to assure you of our continued prayers and our hope for a miracle.

Carol Thonton said...

Know that you are not alone. There is only one set of footprints in the sand.

mrgutzmer said...

We would like to send a card to you and your family.
Could you please email me your address?
mrgutzmer@gmail.com
God Bless,
Martin Gutzmer

mamafrog said...

This just breaks my heart, no dignity for those who are suffering. Please keep griping to us, we are here for it. Give Kathy and Daughter J all our love and virtual hugs to all of you.

Jee said...

What a lousy time to be sick! Not that there is ever a good time, but this time seems particularly bad. I’m praying for you, Kathy, and daughter every day. God bless you with all the graces you need right now.

Anonymous said...

From Danger Will Robinson
SJ,
First.., my deepest condolences for the Living Hell you are having to endure and deal with.
May God Bless Kathy and the Team Clan Mc. G.
2nd. The crapfest at the Hospice place is inexcusable on a good day, but you are 100% correct about the lack of care and compassion and the wait till day 5 or 6 for orientation to happen.
This sounds like the nursing unit at the VA where my father in Law passed. Never die on a Friday the 13th at the VA during shift change. Horrible and non caring individuals, took hours and hours to cover his lifeless body while we were sent on a scavenger hunt for “ counseling“ person who never showed, bc it was Friday, civil servant, and yes .. the place is filled with civil servants, similar to Post Office help, but only worse.

So I completely understand the situation you and your dear family are having to put up with.

I wish your dear Wife a Speedy Crossing with Angels by her side, and God waiting for her at the Pearly Gates.

And , my deepest sympathy for the life’s lesson no one should have to endure, that you’ve had to deal with. Life is tough enough in a good day, Much less on a bad day, then there’s your SJ day at the hospice. It’s just not fair. God Bless You man. You’ve earned your wings.
Thank you for sharing this life event with us, bc people need to be aware of what is going on out there, and it’s a crapfest in this day of Covid BS.
God Speed SJ.
Regards and God Bless
DWR

John the Econ said...

Home hospice seems like the better choice, but without the extra help it's a lot of work physically, mentally and emotionally and certainly not for everybody. And at this point, we need Kathy kept as comfortable as possible. We did it for my mother; The hospice people were great, supplying us with everything that we needed for the duration and dropping in twice a week to check up on us. My sisters & I took shifts for what ended up being a bit over a week. It wasn't easy, but we were all glad we did it. But there's no shame in admitting that you're not up to it either. It's not easy and you clearly need the help. At this point, it's all got to be about Kathy.

Interestingly, at that point in time they had no problem leaving us with a large quantity of "the good stuff" in terms of drugs, which we were administering ourselves. When my sister disposed of what wasn't used, the person receiving them told her that the current street value of what she turned in was around $200,000. These days in the wake of the opioid crisis, I don't know if doing home hospice as we did is even possible anymore without 24/7 oversight just because of that.

My father was in a facility when he officially entered hospice, so we kept him there. Plus, for various reasons I was the only sibling available to be there 24/7 to oversee the event, which lasted roughly two weeks. In that scenario it was best we were in a facility in that I don't think I could have done it at home on my own.

Prayers for a smoother time here on out. And for your remaining time with your Kathy to be as painless and meaningful as possible. We've all felt your love for her over the last several months.

Don't worry about the news. Biden's got everything under control.

Rastapopoulos said...

Stilton - we're still sending those prayers and wishes to all three of you.

Is it possible to get Saturday's concert piped in for your two, or any chance of attending? Perhaps someone techy would make the remote listen a reality?

Is it possible to check out other options? Whether Daughter J or a friend, as I could understand your reluctance to wander about. Of course it all depends on what Kathy desires.

Having visited friends in a variety of hospice situations, my takeaway was the quality and resonance of the hospice staff is very high importance for the comfort of the hospice patient and the health of the supporting family members and friends.

Know that for a great many of us who read your humor and now are sharing in your journey, that if we were close enough to lend a hand, help with research or simply restock your car trunk's booze stash, we would be there for you.



Handy said...

STILT, WHO KNOWS WHAT TO SAY AT A TIME LIKE THIS ? PRAYERS YOU YOU, & THE FAMILY.......TOM

skeetshooter said...

Stilton - I wrote you several months ago concerning the situation that you and you dear Kathy find yourselves confronting.

I have walked in your shoes as a caregiver for my late wife for 15 years before her death some 8 years 8 months and 13 days ago on July 13 th, 2013 at 11:46 pm. The light of my life was suddenly extinguished, And I was lost.

The feelings for her have never left as I expect will be your case. It is live and unkind at times. Remember the best and never forget the joy she brought to your life.

Barry Bank

Spike55 said...

There are people praying for you and your family who know first hand what you are going through. We are very, very sorry. I admire your courage in sharing this. May God carry you all through this time.

Anonymous said...

Sending prayers for all your family. I just retired, having been a hospice nurse the last 7 years of my 28 year registered nurse career. So sorry to hear about your bad experience with hospice care. One of the many things I liked about working hospice is that every day I knew I would pray with somebody, cry with somebody and laugh with somebody - sometimes all three with the same person. Please remember that dying is a part of life. If your beloved bride engaged in humor, let that part of her character be expressed rather than moping around her with a long face and a tearful countenance.

Medicare requires a case conference at least every 14 days, with a much shorter time line when a person is first placed on hospice.

Eventually, there comes a time when all you can do for your family is to just love them. It is hard to let go. Keep in mind that everybody lives out their last days as they will. There is no one wrong way or right way for any of you involved. Stay strong.
nurseJT in Wyoming

chipmunk said...

So-called "rehab facilities", I've discovered, are notoriously horrible. Even if the caretakers do actually try to care compassionately for their charges, the facilities are understaffed, so patients often get neglected. My dad spent a fair amount of time in various of these places, and I was often shocked at the lack of human decency he was sometimes afforded (sometimes he spent hours laying naked on his bed, while they attended to another patient or two, until one of us family members came for a visit and raised holy hell). Your being with Kathy and advocating for her is absolutely the best thing. Be vocal. If you discover a nurse/caretaker that really seems to be trying and caring, see if you can encourage him/her and glean some secrets on how things work around there.

I know you're all exhausted and heartbroken. Prayers continue for the strength you need, and now also for GOOD, RESPONSIVE, hospice care.

Alan Donelson said...

Go home.

Jim Irre said...

What he said ^^^. God bless you!

Lobsterman said...

Stilton, I keep all of you in my prayers every day and 13 years ago I went through what you're experiencing right now. I still think about my wife numerous times every day and feel so fortunate that I met her because I married way above my weight. She was amazing in so many ways and I miss her dearly. I know she's fine because I get "signs" that tell me so. I kept seeing the numbers 111 and 1111 on digital devices everywhere. When I googled it the info I got said someone is trying to tell me they're OK. Stilt, believe me I see it EVERYWHERE. If I'm watching a hockey game it seems there's frequently 1:11 seconds left, or 11:11 left in the period. When I check my phone for a text or email it is often times 1:11PM or 11:11AM/PM. Same thing on my digital alarm clock in my bedroom. Keep the faith, you will see her again and keep talking to her because it's said that hearing is the last thing to go. In the meanwhile, take care of yourself for Kathy and daughter J. You are a rock even though it may not feel that way at times.

Anonymous said...

Sending up many prayers for y'all to have strength, faith and a spot of joy in your days....hard to find, however, necessary to hang onto the positive and move forward....
The only constant is 'change'....
Be open to it, embrace it and accept it...
After having spent months in skilled nursing facilities, I can unfortunately relate to your staffing 'challenges'....doesn't anyone speak clear English, have pronounceable names and answer questions any more?
I used to ask questions so that a "yes" or "no" answer would do it and, yep, you know it, rarely, if ever, did I get a definitive 'yea' or 'no'...
For whatever it's worth....
A large notebook and pen to write down everything as it happens does get staff's immediate attention...
Are they worried you'll report them to the powers that be?
Who knows....
Did get me some better help....
Y'all are in my prayers every day....
The Lord is with you in the storm...

L.C.Clower said...

Bless you, Big Cheese. You're a man of substance, and deserving of a bottle of single malt. And maybe an English-Jamaican dictionary app on your iPhone.

Bobo the Hobo said...

Two ears/no waiting, brother.

Snark said...

Vent. Rant. Rave. We're here for you. Take a nip as needed. Maybe two. I've walked that path, it's rocky and painful. But you will emerge. You won't like it but you'll pull through. Love her and laugh with her if she can. Prayers continue.

Anonymous said...

As my dad told us after my sister passed away: "We are all required to read the Book of Life;
Some of the chapters are unpleasant, and you may not like them, but you have to read them all."

Bob said...

Prayers are with you and all the family. We at the Clyatt household have been a follower of the Jarlsberg household for years, and your contributions to our political outlook.
Again, prayer for you and Kathy......vent away !

KenElder said...

Stilt you remain in our prayers.....I wish I could suffer for you to relieve some of your anguish......

June said...

I've been reading you for years (your astonishing wit and humor and insight made the Obama years almost - but not quite - tolerable) and will continue to read every post. Our hearts break for you, because we understand. Many of us older dudes and dudettes have been where you are now, and know the pain. Take it one hour at a time, and do whatever you need to do to get through - pray, sleep, scream, and yes, drink.

Many prayers for you and your family.

Stilton Jarlsberg said...

@Dear Readers- What would I do without all of you? Thank goodness I'll never know. So much warmth, wisdom, humor, humanity and sharing. Balm for my soul.

Regarding the "take her home or stay here" debate, tomorrow we meet with "the team" who had best impress me. There are, however, drawbacks to bringing Kathy home, including the fact that she'll need two able-bodied caregivers 24 hours a day (I could be one of them for 18 hours a day). Months in bed on chemo have weakened her, and edema has added 50 pounds of weight. She can't stand unaided and soon won't be able to control bodily functions and will need frequent cleaning.

I've been told that the hospice agency can offer more direct support than we've seen so far, and tomorrow I'll learn more about that.

There's also a middle ground alternative: stay here in the facility and hire my own private health worker(s) to be here at my side so that there won't be any more 30 minute waits for someone to answer a call button.

I don't know what I'll do yet, but I'll make damn sure that Kathy is treated with care and dignity. (more)

PCBYTOWN said...

You want be abandoned in your time of need.

Anonymous said...

Prayers continue.
Nothing else to say.
.
NSF

Stilton Jarlsberg said...

CONTINUED - On a different note, the best thing that happened today came as something of a surprise. Various people came and introduced themselves and I'll be damned if I can remember their names or what they do. At one point, a young woman poked her head in the door and announced that she was a chaplain with the hospice service. I waved her off as if she was landing at a bad angle on the pitching deck of an aircraft carrier. But she persisted (was it Elizabeth Warren who "persisted?) and said she knew I'd said her services wouldn't be needed, but she still wanted to meet us and see if there was anything she could do to be helpful.

I ended up pouring my heart out to her with Kathy looking on and nodding. Just sharing the frustrations, affronts, and burdens of the last couple of months - and the additional pain which her agency had caused us. And she actually listened, just like a real human being. And she validated our feelings and stories and gave comfort, accepting that we're not "religious" but are spiritual. She's the best thing that's happened here since we arrived, and I asked her to attend tomorrow's "treatment plan" meeting so we'd have a caring person in the room.

And yes, she prayed with/for us which we thanked her for. We don't know how the universe works, but what she was saying and sharing felt good.

Veritas said...

All my prayers for you and your family. Ask for grace, patience. There will be a far better time and place.

Anonymous said...

Stilton, my wife had oral surgery last week for a decaying tooth implant. The DMD prescribed a liquid made by Colgate which she rinses her mouth with to hasten the healing process from the surgery.

The product is named PerioGard. Both my wife and her twin swear about it’s healing capabilities. On the other hand, there are other over the counter that my work just as well, or not.

You, Kathy and Dau. J. have our prayers and love. Please take care. You all are Loved!!

Mike aka Proof said...

Stilt, this chaplain sounds like a keeper. Not to bring up bad memories, but I believe it was Hillary, who "nevertheless persisted"!
Hope and will pray your meeting tomorrow is fruitful.

Alan said...

You and yours are in my prayers my friend!

M. Mitchell Marmel said...

https://fwsymphony.org/concerts-tickets/subscriptions-and-series-info/family-series/when-instruments-roamed-the-earth

I believe this is the program in question? :D

Anonymous said...

As I think back, on all the anger and guilt that seems to inflict those who care deeply, the rage that would well up inside, there was so much for which I could do nothing!
And yet, with the guiding hand of Hospice, my daughters and I gave the greatest of all gifts to the one we loved.....A peaceful death.

Anonymous said...

Dear Stilton, Kathy and your daughter....
Prayers for strength and Peace during this extremely dark road you are traveling. Love and more prayers.

Wayne in Indiana

Rod said...

You're most recent post.... good to hear.

Snark said...

We never know that of those who walk around us might, who might be an Angel. Another solution (pun intended)is "Magic Mouthwash". It is a pharmacy preparation, not made by a pharma company, many drs have their own tweaks on the formula. Helps oral pain and promotes healing.

WestCelt said...

Your the one taking a beating. We're here for you , Kathy and your daughter. there words, but I don't know them, to express my sorrow for what your going thru. my mom went through 3 bouts of cancer and died from bone cancer so I know your pain. god bless and we're all praying for you.

Nancy Dickerson said...

Ah, Stilton, so sorry for you all. spent three nights in a hospital I used to consider horrible. It has changed for the better. Pain pills can change anything. May God bless you all and keep you. With Love, Nancy

Stilton Jarlsberg said...

@Dear Readers- It's Tuesday morning here (well, probably everywhere) and we're off to a slow but not horrible start. We meet with the care team at 2 o'clock, and Daughter J will be visiting again this morning. Let me respond to a few individual comments...

@Bobo- I'll ask about it, but I think Kathy is already using what is considered the gold standard, "Magic Mouthwash" which is a special formulation.

@M. Mitchell Marmel- That's the one. Poke around a little deeper online and you might find a picture of someone who looks like Santa Claus (I've lost 50 pounds since then but I'm aging in dog years). The concert is great fun for families and I like to think that there will be laughter and happiness occurring with a bit of our footprint on it.

@Anonymous- It's that final glide path to landing that will make all the difference. That has to be right. HAS to be. The other stuff I'll simply let go.

@Snark- "Magic Mouthwash" is indeed what Kathy is using. She paints it directly on the sores using little sponge "toothbrushes" rather than swishing it all over. One bottle lasts about 2 days so it's my job to make sure that it keeps coming.

@WestCelt- I'm so sorry for your loss. And as I've said before, but bears repeating, while this is the worst pain I've ever felt, I know that nearly everyone has been hurt just as badly and likely more often. Our situation is personal but not "special." The support I'm getting and feeling from my many friends here, however, is very special indeed.

@Nancy Dickerson- When the time comes, I frankly hope morphine is magic.

indianjim said...

My prayers go out to you, Kathy and Daughter J
I have some idea of what you are going through,
no matter how hard cherish this time it is precious,
hold tight to your faith, not religion per se, Faith you will need it to carry you the rest of the way.

May god bless and keep you.

Kent Whitehead said...

Sometimes God works in mysterious ways and sometimes He's pretty obvious. I'm glad you gave the chaplain a chance. We're still praying for miracles. Stay strong.

OldTexan said...

Stilt,
Wow, I missed checking for an update on your site yesterday and what a mess Kathy and you have been mired in with your hospice experience I am so very sorry you all are being pounded on while you are down and trying to move on. Reading about your experience I am hoping you can use the young woman chaplain as an advocate to help obtain better information and care. Please let her use her faith and prayers to wrap you in a spiritual shield to keep the bad stuff at least a little distance away, you need all of the angels possible at this time so let her be one of them. You don't have to understand nor even believe much of any of this, that part is all right but you and Kathy might just let it, what ever it is help you and the chaplain might also have access to a Stephen minister program with her church and they could assign a trained lay person to visit with you and listen to you and let you vent, perhaps say a bit of prayer for you and Kathy and give you one more person on your team. As for what you believe or don't believe, that's your business. Once more this experience should not be happening this way for your family and I hope today brings some changes for the better, blessings for your family.

Maoz said...

Kathy and Stilton (and Daughter J, if you happen to be there right now), I am so glad you gave that chaplain a chance to land on that pitching aircraft carrier. And I want you to know that prayers continue here, too, for you, Kathy, and for Stilt and Daughter J as well. Somewhere up the line Anonymous suggested having a notepad and pencil at the ready, and how that might inspire staff attention. A gazillion orders of magnitude less seriously, when at work I usually carried a clipboard. Needed it for myself, to keep track of the project (numbers fly out of my head at near the speed of light, and I hate to have to count the widgets AGAIN) -- but it did seem to make my boss think I was always on the ball!

Stilt, vent, rant and rave as much as you want and in whatever format you want.

We love all of you!

John the Econ said...

Grateful you found a sympathetic ear and emotional support on-site. Prayers for a productive meeting this afternoon.

Stilton Jarlsberg said...

@Dear Readers- Yes, I'll be clinging to the chaplain as our advocate. I'm nog worried about theology or quantifying the great unknown. Simply put, I believe we know nearly nothing about the way things work in this universe and it is all stranger and more wonderful (as in inspiring wonder) than we're even capable of knowing. I think there are a lot of paths to help us get where we're going. So I'm going with the spiritual flow instead of trying to reason anything out at an unreasonable time.

I'll damn well be taking notes at today's meeting, and I intend to be unusually assertive. Kathy doesn't have the time nor does she deserve me to be a namby-pants now. I'll state what we want and ask how - not if - we get it.

By the way, I told the chaplain that if anyone in this meeting tells me again to "man up" when I start crying, she should smack that person in the back of the head or I'm going to pounce like an angry bear. You want "manly?" Oh, I can give you (bleeping) manly.

And no, I'm not ashamed to cry. I'm sorry for people who apparently don't know how love feels.

And now a brief moment of levity: last night in the dark, I got hungry. And I'm here to tell you that in the solemnity of a dim room where a critically ill person is trying to get some sleep, there is NO damn way to open a big bag of barbecue chips without it sounding like I'm felling redwood trees.

Queso Grande said...

My heart goes out to you, my friend. None of us are surprised at your strength, commitment and love. We are here for you, just ask.
QG

Anonymous said...

I have been following your site (both this one and Johnny Optimism) since Rocky Bummer has been in office. I have always thoroughly enjoyed your witty sense of humor and appreciated your ability to mix real news with a touch of laughter. I am so sorry that you and your family are going through what you are. You will be in my thoughts and prayers. Thank you for making my days more enjoyable through the years. Reading your posts makes me smile and helps the day go better while at work.

- Dan B

Ed Campbell said...

Stilton

Vent away, we can take it.

Holy crap I hope you and Kathy do not have to put up with more BS and you can spend your time on the important stuff like holding hands, looking into eyes,retelling memories and just enjoying one another. The way you describe your hospice experience makes me feel blessed with what my wife and I experienced.

Tsgt Joe said...

Home hospice care is very draining on family. My mom needed total patient care but she wanted to die at home. In addition to the limited professional care my sister, my daughter and I had to work full time to take care of her. Luckily I was retired and my daughter was between jobs and my sister lived with mom.

Jill of all Trades said...

Somebody told you to “man up”?!?! OMG….. 🤦🏻‍♀️😡

I’m not sure how much manlier you can get, eating BBQ chips in the middle of the night. Nothing feminine about that one. Ha.

Seriously though, someone needs to be reported to their superiors….

4sleiborg said...

We were lucky enough to do home hospice. It worked well for us, and every one of their people we contacted was good to me and Merilee...helpful and sympathetic.

TheOldMan said...

My mother had home hospice in addition to HomeInstead aide. With this she was able to live in her home, in her room, in her bed to the end just like she wanted. No machines that go beep, no doctors, no excitement, only painkillers when needed. The hospice (Residential Care in Michigan, excellent!) had nurse, spiritual person, music guitar fellow (she got kick out of that!), shower person, doctors. I was surprised that hospice was available for someone who wasn't "sick" other than creeping dementia (not much but it was moving in) and basically had enough. Been there, done that, had the children, grandchildren, great-grandchildren, she kept saying it was time to go. I always thought that you had to be ill for hospice; had I known I would have hooked up with them earlier.

Ogrrre said...

Cancer is a class a beyatch! My mother was diagnosed with pancreatic cancer, and by the time they diagnosed her, it was too late to do anything. She decided that if she was going to die, she was going to die at home, in her own bed. Dad and I took care of her - well, it was mostly dad, as I had to work. It was the roughest thing in the world to watch mom waste away to nothing, and there wasn't a damned thing anyone could do about it. She passed on about 3 months after she was diagnosed. That's been better than 20 years ago, now, and I still miss her.

joecrew said...

As in the beginning of this "voyage," your readers, actually we are more like friends, are still with you and your loving family. You remain in our thoughts and prayers. joecrew

Robin Datta said...

Introduced to your blog today via Peter, the Bayou Renaissance Man ('s) blog.
Sorry to hear of your predicament.

Tiding over the harshness may be helped by a resort to the Self of all selves; the Reality that includes all; through it the whole Universe (multiverse?) is with every being, although all too many are unacquainted with it.

May you recognise It, ever everyone's Self.

Stilton Jarlsberg said...

@Readers- The upshot of the "care team" meeting today was that this place doesn't have enough staff on the weekends to make sure Kathy's needs will always be met quickly. So I'll be hiring my own people 24/7 to augment the staff here on the skeleton crew days. Hopefully I can also request English speakers and if they cost more, so be it.

The "Man up!" chick was not in attendance, which meant the tear-soaked snot-stained Kleenexes I piled up went sadly unthrown at her.

Daughter J came earlier in the day and it was nice for us to all be together, talking about pointless things as Kathy listened and reacted (albeit sleepily).

And all of this just sucks incredibly hard, but it's dark out now and it looks like somehow we'll get to the end of the day, which is pretty much my only goal for any given 24 hour period. I can't and won't look farther down that road.

A horrible day but not a bad one. And if that doesn't make sense to you now, I hope it never does. Keep those prayers coming - it confuses our chaplain!

emtgene said...

Brother, I know where you are and how it feels. My beloved Deanna, who was already disabled with Lupus, found out in October of 17 that she had cancer. Subsequent testing and biopsy showed it to be widespread aggresive cancer. When we got in front of the oncologist, he said, sorry, but it is too far advanced for me to do anything. He gave her 2-3 months, at best. We went to hospice, and they were very much caring professionals. She passed in January of 18, one week short of her 60th birthday, with her daughter and me by her side. Four years in, it is still very hard to deal with the loss. God bless you both.

Stilton Jarlsberg said...

@emtgene- I'm so sorry. I can't think of consoling words for you because I can't imagine what words will ever console me. So I'll just say that I genuinely care and I grieve for your family's pain.

Anonymous said...

there is a song called Scars in Heaven by Casting Crowns. You can find it on Youtube. I think it says the things we are all trying to say to these wonderful people.

Praying for God's peace on this journey.

Larry

Don RN said...

Stilton,

I also have come over from Pete Grant’s place. Of course prayers for you and your family.

Though your experience so far may not be all that unusual in many places and families, there are places that provide outstanding hospice care, and I hope that others are more fortunate. I am so very grateful that you have the resources to provide for your wife.

My only suggestion is to hold on to each moment, find the small spark of light you will want to remember and cherish. We learned that lesson early and practiced it for almost 28 years.

Perhaps the difference for us, we are blessed to have a free standing hospice house in our rural community – it’s all they do. Their care and services were outstanding! That might be something for others to look for when in these difficult decisions.

We knew we would eventually lose our special needs daughter, and had a couple of years knowing that she was on borrowed time. Fortunately, she was close to baseline and able to continue with her normal activities and interests until she couldn’t. The transition was only a couple of days, and thankfully she wasn’t scared or freaked out. They slightly bent the pandemic rules, so we were able to stay with her continuously, and were able to be parents more than caregivers.

It has been about 18 months and I can assure you that grief and healing are possible. That wasn’t apparent during the initial period of shock (even with preparation), but the time did come when reflecting brought joy more often than sorrow.

Peace and strength for you, your daughter and you wife.

Don

Robin Datta said...

It is a big step from "There is one God" to "There is only God" (= There is nothing that is "non-God"); likewise a big step from faith to direct awareness, from complexity to utter simplicity. A transition that sheds everything yet excludes nothing. Scientists examines the objects of their study; it is quite another thing to examine the examiner (and not mistake a concept of the examiner for the examiner itSelf).

Allen said...

when my dad was in hospice about 12 years ago, the director of the building and the head nurse were screwing each other. in his office. loudly. multiple times a day.

everyone knew about it (except, apparently, their respective spouses..) and nothing was done. as a result, none of the medical staff gave a damn.the only time my dad actually got anyone looking after him was when a good friend who was a nurse came daily to check on him. she happened to work at the state mental hospital on the other side of the parking lot, so she stopped by every day before she went home. she was the one that told us he had passed, because no one in the facility had bothered to notice.

mahamis said...

Prayers from our household to the Stilton household. And pls. do not get discouraged from writing. Writing has such a cathartic feeling.

Maoz said...

Stilt, I *do* hope you are still saving those snot-filled Kleenexes. She's gotta come back on duty sometime....

Prayers and love to the three of you!

CenTexTim said...

For Kathy, I pray that she has freedom from pain, and comfort from the happiness she has shared with her family and friends throughout her life.

For you and Daughter J, I pray that you receive comfort from the knowledge that Kathy knows how much you both love and care for her, and how much you cherish the memories, tears, and laughter you have shared.

Alan Donelson said...

I don't actively look for opportunities to have a "good cry", a release of negativity within, outpourings of the Infinite Well of Sorrow and Grief, long stored from tragedies small (though large in childhood, remembered, stored as warnings for future encounters of the bad kind) and great.

I steel myself as I click on your site, Stilton, brave and noble soul. The words and thoughts and prayers of all the above bring tears, many tears, of gratitude for their attitude of concern, a desire to help, to heal, in the face of hopelessness, still inviting a miracle.

Surely, a miracle!

Average Joe said...

As Ringo is so so want to say, mi amigo, peace and love,but it's not a catch phrase here and in the most serious and delicate way. Many love, but few of us know real love.

Old Peculier said...

Praying for you all Stilton.

M said...

My heart breaks for you and Kathy. I am praying for you both; that God gives you the strength to make it through this, as it is and that He grants you his peace in this life and in the next.

JRMD said...

Stilt,
I just wanted to let you know that you folks are still in my thoughts and prayers.

Rastapopoulos said...

At Stilton, Kathy and Daughter J, know you have ongoing prayers and wishes.

So feel for you all.

Display Name said...

All I can say is God Bless you both and give you strength.

StBernardnot said...

My heart goes out to you folks. Someday I'll write more about the trials at our house. We pray & pray for all in these terrible situations. We can't understand why but trust our Lords plan. God Bless You, Stilton, & your family.

Stilton Jarlsberg said...

@Dear Readers and StBernardnot- I'm so sorry for what your family experienced whatever it was. As I've said, we're not suffering pain that others haven't felt - we're simply joining a very, very large (pretty much universal) club of suffering humanity that we were lucky enough not to be in until now.

Kathy is resting comfortably right now, which is always good. This morning I met with the service agency which can send additional medical help and we struck a satisfying compromise. Since the facility has promised to do better on the weekends, and Kathy's care needs have gotten slightly less since she won't be getting out of bed (and needing that assistance) anymore, I'm not hiring round-the-clock care but instead have everything in place to make a phone call and have such care show up in a few hours and for as many shifts as needed. This gives me the mental safety net I needed and will hopefully see us successfully through the weekend.

A therapy dog passed through briefly this morning. Kathy gave her a scratch and I got down on my knees to love on her. Mind you, her owner admits that she's pretty aloof for a therapy dog but I didn't care. Dog contact helps - period.

It's going on 11:30 in the morning here and I don't mean to brag but I haven't had any rotgut scotch at all for almost an hour. It's a little something I like to call "class."

A short while ago, one of the workers here who is an absolute gem had to hurry into the room and bar the door with her body. There's a little bird of an old woman in a wheelchair who more or less lives in the hall, has dementia, and has a suspicious look for all. When we first arrived here she held our door open and pointed an accusing finger at me and proclaimed "I don't believe YOU either!" Which, in fairness, is a pretty damn effective conversation stopper. Anyway, another side of her personality that I didn't know about was that she apparently packs a surprisingly solid flurry of punches if you get within her strike zone, so I'm making a point of not doing that.

Also, when she gets excitable it revs up The Man Who Yells who lives across the hall, causing him to yell. A lot.

So yeah, that's why at 10:30 it was time for Clan MacBrunch.

FUNNIEST TOTALLY UNFUNNY THING OF THE DAY: The Hospice director told me "you know this is a good place because we get a lot of repeat business."

OldTexan said...

Stilt, I appears as if you are finding different ways to compensate and cope with your facility and I do remember when our father was in his mid 90's and in a similar situation he went through a couple of months of being frustrated with some dementia and having been a man who never used foul language he became loud and used lots of words the had no idea he knew. It was a tense time when the church choir he had sung with for over 60 years drove 40 miles to sing carols one evening close to Christmas and we, his kids were on alert to try to shut him down if he started his cussing tirade which did not happen and thing we great and smooth and the music from his friends brought his thinking back into focus. His last month he did settle down and kind of cleared up a bit better, I have no idea how that stuff works but love is important for all involved in this stuff. Blessings upon Kathy, you and family and the caregivers at this time.

M. Mitchell Marmel said...

I spent the first part of this week as an alternate juror for a Murder 1 trial.

Now, you'd THINK this wouldn't be particularly FUNNY, but...

Safe for work link presented without further comment.

https://www.furaffinity.net/view/46208241/

John the Econ said...

"There's a little bird of an old woman in a wheelchair who more or less lives in the hall, has dementia, and has a suspicious look for all. When we first arrived here she held our door open and pointed an accusing finger at me and proclaimed "I don't believe YOU either!" Which, in fairness, is a pretty damn effective conversation stopper. Anyway, another side of her personality that I didn't know about was that she apparently packs a surprisingly solid flurry of punches if you get within her strike zone..."

She would have been a hoot to let loose at the State of the Union speech.

Grateful that Kathy is comfortable and you seem to have things relatively under control. Yea for a little bit of fur love.

KELLY FROM WI said...

Thanks for posting updates, check for them regularly. Still praying for you, Kathy and family. Glad you got a visit from a therapy dog. Probably the best behaved visitor you have had recently.

Jon said...

I suspect you are the stronger of the two and God in His mercy knows this. My prayer continues to be that His grace is sufficient for your needs.

This is a novel shared grief born only from knowing someone by their words (and art) and the common bond as frail humans. Yet is is a grief none the less and I suspect all of the above understand and share.

Stilton Jarlsberg said...

@Dear Readers- Friday night as I write this, making it officially one week that we've been here in the Alzheimer's Wing & Part Time Hospice. The medical folks say that it's unlikely there will be another full week ahead of us and that anything could happen at any time.

Kathy is sleeping as I write this in the dark; she's been getting drowsier each day which is both a sign and, hopefully, a blessing. Her blood oxygen was low yesterday, so we now share this odd dorm room with an R2D2-sized oxygen generating machine which feeds her nose tubes. The machine chugs constantly and has a water bubbler (to humidify the oxygen) and has a rhythm of a soft "thud" drum beat and an asthmatic gasp every five seconds. I told Daughter J that it sounds like a steampunk artificial heart, and she agrees that I nailed the description.

And Kathy just stirred from her sleep and told me "when we're on the other side of this, I just want to laugh and joke about it with you." Which is how we've shared life for most of 50 years, and which was the perfect thing to say to put a smile on my face, tears in my eyes, and yet another spike through my heart.

The day has been largely unremarkable apart from a few sporadic incidents of existential horror. But Daughter J came for a nice visit and delivered things to keep her old Dad going a bit longer: Ativan (tranquilizer), hearing aid batteries, and a big nasty plastic jug of...of....ha! Mouthwash. Well really "Listerine Total Care" because my gums are erupting in bleeding sores and the enamel appears to be vanishing from my teeth ("Clan MacGregoritis"). Between Covid and Cancer, which incidentally will be the title of my upcoming autobiographical confessional (not) I haven't seen a real dentist (except the emergency quack who gave me a bad crown a few months ago) for over two years. Which would have been a bigger problem for me socially if I'd had anything to smile about, but THAT didn't happen.

What else? After deciding that I didn't necessarily need to lay out $1800 this weekend to make sure that someone would answer the call button, we called for some help this evening and waited nearly 40 minutes. Remind me never to have a fall, suffer a heart attack, or choke on a moldy crust of bread in an American nursing home...because 40 minutes later you're room temperature.

But perhaps to make up for this lack of service, our hospice agency sends an aide to visit us every morning to do whatever we might need. Only she's never shown up before 4 pm, offering to give a sponge bath only after she knows that the nursing home did it hours earlier. This afternoon we texted her that Kathy would like a leg massage because of her edema, and the aide texted back "I'm running late but I'll be there to give the massage!" As it's sneaking up on 9 pm, I'm thinking that would be what the medical profession calls a bald-faced lie.

Ha! She just this moment called the cellphone I'm writing this on, clearly unaware of my policy on answering cellphones in dark sick rooms. Or anywhere else.

And not to keep you in suspense, of course I massaged Kathy's legs.

So now it's time to get to the serious business of having a mild (honest) scotch and water and browsing the Internet for anything distracting for a few hours (Kathy's asleep, but it's my self-appointed job to watch over her until at least midnight.)

But before I go, let me thank you again for being here, for your prayers, for the experiences and wisdom you share here, and just for being exactly the kind of people who are such a gift at times like these. In that regard, at least, I'm a damn lucky man.


M. Mitchell Marmel said...

Here's a bit of distraction: Extracting a SAAB that has had trees growing into it for 40 years or so...

https://www.youtube.com/watch?v=ilqYDlPsD6g

The Overgrown Hobbit said...

Keeping you in my prayers.

Stilton Jarlsberg said...

@Readers- Saturday morning and things are quiet here. Well, they are NOW. A short while ago, the oxygen machine (not a ventilator) Kathy is hooked to suddenly stopped, a piercing alarm sounded, and a "don't ignore me" red light glowed on the no-longer-breathing machine.

In the five minutes it took someone to come, I ascertained that Kathy was breathing normally, so we hadn't had a dramatic movie moment. Eventually a nurse (?) came in, tried turning the machine on and off, then unplugged it and plugged it back on.

It began hissing, thumping, burbling and gasping again with a green light. It was then explained to me, "Sometime dey do dot."

Anonymous said...

My wife has listened to me reading your posts, and suggests finding an "End of Life Doula". They act as your paid advocate and will help with paperwork and making sure Kathy is as comfortable as possible. They will also support you and Daughter J after Kathy passes. The parent organization is INELDA, the International End of Life Doula Association, and they have over a dozen members in Texas and some in the DFW area. You can find them at inelda.org.

CenTexTim said...

My father passed away in a hospice. As we were all gathered around him, waiting for the inevitable, someone passed me this quote about watching a loved one die. It seemed a little harsh then, but as time passed and I thought about it, it became more and more soothing. I pray it will have the same effect on you.

“It’s like waking up from a bad dream only to find out that it’s your reality, it’s like watching sunlight fade from the sky, ... and being powerless to stop it. You may as well try to stop the waves from rolling in, or the sun from rising. In the end, the waves will roll, the sun will set, and death will come. The only thing you have a choice in? How you deal with it…when it does.”

― Rachel Van Dyken, from the novel "Toxic"

I can't say anything about the book itself, because I haven't read it. (It's a "contemporary romance," which is not my usual literary choice.) But the author seems to be quite popular, as evidenced by her bio blurb.

"Rachel Van Dyken is the New York Times, Wall Street Journal, and USA Today bestselling author of regency and contemporary romances."

Anyway, I hope this gives you a little bit of peace in an otherwise bleak time.

Rod said...

Well actually Stilt & Kathy: It could be just a wee bit worse. In very similar, almost identical situation running concurrently: At least it does not sound like ya'll have a large and crazy-ass extended family involved. One could not write some of this stuff as fiction.

"Peace and Best" for you all; and we're still here. [grinning]

John the Econ said...

"When we're on the other side of this, I just want to laugh and joke about it with you."

That is the gift.

Renewed prayers for you this weekend.

Jill of all Trades said...

I always come online intending to seriously read a serious update, and then I see something like “Sometimes dey do dot” and I end up feeling inappropriate as I burst out laughing. Haha. Anyway I’m glad you are having a relatively quiet Saturday, anyhow! ❤️❤️❤️

John the Econ said...

@Stilton, this is a story of something that happened to me a few decades ago that I hope may bring comfort to you and Kathy. I've shared it on many deathbeds with both strangers and loved ones. I've been telling it for years to people who I think needed to hear it, but it's always been in person. So for the first time in nearly 20 years I had to type it up. I hope it comes across as well in text as it does in person.

My gift from Herb:

Decades ago, I acquired a client named Herb who hired me to assist him with aspects of his business. Over time we became friends. As he and his wife lived on the opposite end of the next county, so after my hour and a half drive we’d usually go out to lunch before tackling the business issues of the day and would talk about whatever was on the top of our minds at the moment. Herb was a man of faith, so our discussions covered all sorts of topics from current events to philosophy. I always looked forward to our visits.

One day I received a call from Herb’s wife. Herb had passed, unexpectedly. I never knew Herb’s exact age, but he was several decades my senior. But he was in good health and physically active, so his passing was a complete surprise to everyone.

Herb’s wife needed my assistance to deal with some loose ends with Herb’s business and we planned for me to come out and help a week later. Upon my arrival, we went out to lunch as Herb & I used to do. And she told me the following story:

She and Herb owned a condo in the desert where they’d frequently spend their weekends. After their weekend together, it was planned that Herb would continue on a road trip to attend a conference and his wife would return home. On Friday evening, she was on the phone with one of her clients when Herb mentioned that he was going out to his car to retrieve some items. She continued with her call and when it was concluded some time later, she realized that Herb had not returned. So she went to go find him, and soon did. Herb was laying on pavement next to his car as though he had just peacefully gone to sleep. Herb was gone.

The next week, she called a girlfriend to let her know of Herb’s passing. Her friend went silent for several seconds, and then said, “I saw him in a dream that night”.

Her friend, who had never seen or been to their condo described the building and parking lot in exquisite detail. She described Herb’s car for which she was also not familiar with, and even what Herb was wearing. It was as though she had been there, or was there.

Except in her dream, Herb was getting into his car as though he was about to leave. When her friend approached Herb, he said:

“I understand now. It’s all about love.”

Then Herb said, “I have to go now.”, and he left. And that was the end of the dream.

Needless to say, both Herb’s wife and her friend were stunned.

When Herb’s wife relayed the story to me, all I could think was “That’s so Herb”.

John the Econ said...

I do not think it was an random accident that this story made its way to me at the moment that it did. At the time, my parents were not in good health. My mother had terminal cancer and the milestone you always think is over the next hill was now coming into sight. At this point, she had months at best to live.

Even though I have been a Christian the whole of my life and have always believed in the life everlasting, this was a message that I really needed at the moment. I found this message from Herb a wonderful gift.

Since receiving his message, I’ve spent much time contemplating its meaning, “It’s all about love”. I think any being that is capable of love can receive the gift. I think that everyone who has known real love will eventually be reunited. In fact, when you distill the message of Christ, that’s what you’re left with. Love.

I know that some day I’ll be able to thank Herb for seeing to it that I got his message when I really needed it.

And I know that some day, you and Kathy will laugh and joke about this, along with so many other things. Because you know love. We've seen so much of it from you over the last several months.

I hope this helps.

Stilton Jarlsberg said...
This comment has been removed by the author.
Stilton Jarlsberg said...

@Readers- I deleted my own comment above, but didn't want to be weasely enough to just make it disappear. I got a bit deep into self-pity and in retrospect it was inappropriate. My apologies.

@John the Econ- I appreciate the story about Herb although don't know what to make of it. Which is fine - I'll take a bit of promising mystery right now. There are other stories within my close family that suggest that existence continues in some form. Some of those stories are about discovering that all-encompassing Love is indeed the next plane of existence. I'm hoping that's true.

Sortahwitte said...

Stilton, the biggest majority of us here are adult enough to hear whatever you care to say. You are our friend and brother. We support you by lifting your whole family up in prayer and loving all of you. You need money? You need a doctor with a broke nose? You need a delivery of pizza from northern Oklahoma? Ask, my friend. I aim to please. Love, Glen and Sioux.

Robin Datta said...

For the realized person, death makes not an iota of difference. A clay pot has space inside it, and there is space outside it. By moving the pot from one place to another, the pot-space may seem to travel through great-space, but one may also contend that great-space remain unchanged while pot moves through it with a changing part of great-space identified as pot-space. When the pot breaks, the pot-space "does not travel, does not merge, does not do anything: it is never lost, but no longer has a separate identity".

In the non-Dual Indic traditions the self "does not travel, does not merge, does not do anything: it is never lost, but no longer has a separate identity". It has always been, is now, and will always be the Self of all selves, the One without a second.

Stilton Jarlsberg said...

Glen & Sioux- I know that readers here tend to be "life-experienced" and can deal with pretty much anything I throw at them. I'm not afraid or ashamed to show emotion, and I'm grateful for being able to lean on you, learn from you, cry on your shoulders, and benefit from your support and prayers. All that being said, the post I deleted just crossed a self-imposed line.

And I really do know that I could wish for almost anything at this point and you folks would make it happen. I'm fortunate enough not to need anything except the one thing no one can give. But I'm very grateful all the same, and if I think of anything I really will ask.

Stilton Jarlsberg said...

@Robin Datta- The points you make are interesting and I'm sympathetic to them, but it's also way more than I can process (or even try to) right now. If you would, send future such comments to me directly at Stilton AT Cutcheese DOT Com for me to review when things in our lives settle down. Thank you.

June said...

We are all still out here, sitting with you and reading your stuff every day, so that you're not alone in all this.

A couple of nights after my Dad died, I had the most vivid dream. From a long ways off, he danced up to me in white tie and tails, Fred Astaire-like, and said "everything is just fine." And then he danced away and disappeared. It was very comforting, and I could care less if it was "real" or not.

As Dumbledore said, "Of course it's all in your head, Harry. That doesn't mean it isn't real."

Many prayers, again and again.

DeplorableGranny said...

Stilton, I am praying your family will receive the same hospice care my mother received. If a death can be a beautiful death, my mothers was. She received mucus patches, pain patches and daily moisturizing massages while being spoken to with a gentle loving voice. My mother slipped into a pain free, peaceful sleep and passed away five days later. I am so sorry you and your family are going through this. It looks like you have many prayer warriors and people that love you. Virtual hugs on the way to you and yours.

John the Econ said...

There's no need to apologize. We all know that you are beyond tired and emotionally raw.

I'm sorry I missed my mark above. After the better part of nearly two decades, this was the first time that I'd tried to tell the story in written form, and that was sort of a rushed first draft I blew out Saturday. Clearly I need to work on it.

The gist of the story is that shortly after Herb died, he showed up in a dream of his wife's friend, with a salient message. It was a miracle that this message made it to Herb's wife, and then to me. Or at least a statistical improbability. (Which I often consider the same thing)

When Herb died, he finally had his questions about existence answered: "It's all about love". Love is what binds us. Love is what transcends the 3-dimensional universe with linear time that our limited physical bodies exist in and senses can interpret. Love is why you and Kathy will get to look back at today in the future with a totally different perspective. And without the physical pain or limitations.

This is the best I have to offer you, along with renewed prayers for strength & peace.

Stilton Jarlsberg said...

@June- Thanks for the nice letter. I'm hoping for a dream (or something more than a dream) like that.

@Deplorable Granny- That's good to hear. Pain-free is the goal here. Kathy seems to have lost ground overnight and the hospice RN will be here soon (albeit not on an emergency basis). I'll know more soon. Or not.

@John the Econ- Your message came through perfectly clearly the first time and was appreciated. Thank you sincerely.

M. Mitchell Marmel said...

(hugs) We're here for you, my brother.

Unknown said...

You are all in my prayers, so very sorry for all of you Stilton, and only wish you could have had hospice at home. I've tried to remain quiet and just listen to what you've been writing with high hopes, but knowing the path you are on... I should have just stayed quiet.

Bobo the Hobo said...

Just popping in to tell you y’all are still in our prayers.

walta1237 said...

Please accept my sincere condolences.
I am sorry for your loss.
My Wife of over 50 years, Joan, passed on Aug 15, 2018.
She died in Hospice, from multiple brain strokes.
The Hospice sent a Chaplain to my home to console me,
and to bear my inconsolable grieving.
The Chaplain gave me reading materials and taught me for 12 consecutive weeks.

The Chaplain brought me relief from my grief by teaching me how
to finally let go, and say good bye to my wife.
Let go. Say Goodbye.

Really-Windy said...

My sincere condolences to you and daughter J. Life will go on, but it is never quite the same. I'm glad you had 48 fantastic years. That is quite an accomplishment in itself. Best wishes.

Joni M. said...

Im So Very Sorry For Your And Daughter J.
Life Will Continue, But Not The Same.
You Had Many Wonderful Years You And Kathy, Cherish Every Memory.
My Thoughts And Prayers Are With You and Your Daughter.

Bear Claw Chris Lapp said...

My sincere condolences and prayers for all of you. Remember she is in a better place and you and I are stuck here in the show.

Vincent w Kimszal said...

Stilton
Been reading you for a few years now
Love it
Commenting only because of your “hospice”
Situation
My Two cents
When my mother became cancer stricken ,we put her on hospice
Quick education
They are not all run the same
The first was run by a local hospital
She was able to be at home and medicated
For pain
I was working full time and living with her
Helping out
This hospice out right “sucked” to be “nice” about it
She was on pain meds and started to complain about intestinal pain
“Screaming” at night…..I was at my wits end
In dealing with them…hospice that was
I called the emts they came and took her into the hospital that hospice gave me shit for doing that….Because she was on “Medicare” and she would loose her funding I was told
Bullshit
That hospice out right sucked

Thank god my mothers cousin worked for a other one catholic charity run
She was able to pull some stings and got her in there
First off the abdominal pain was from the fact that she was on a high dose of pain meds
Which any “junkies” knows “slows” down your bowel movements
That’s why she was in pain
The first hospice doctor should have addressed this he didn’t
So this catholic charity doctor addressed this immediately, put her on stool softeners and laxative “as well as getting the old latix gloves out and “manually” clearing the problem

She started to feel much better in spite of her cancer
My suggestion not really knowing what’s the issue is to find out who runs the hospice
And work “Politically” to address the issues
Hell you could even give them a scrotem squeeze if things don’t go your way
Hoping for the best